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Omg...i Might Be On To Something


Rachel--24

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confused Community Regular

I had an lightbulb moment at 2 am this morning. My body hates citric acid. Remember how i got sick from the spaghetti. Well yesterday i had some iced tea that has citric acid and i felt a little off but still able to clean and cook lol. Well then my stomach was cramping and my head hurt at midnight.

I guess i need to stay away from it. I still kinda feel out of it this morning. I guess just one more thing to add to my list lol

I only got to page 7 last night. The talk about corn is kinda boring lol. I need to get to the good stuff like metals and stuff lol

paula


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mftnchn Explorer

Kassandra, my prayers are with you too!

Sherry

dlp252 Apprentice

Paula, I think the metals issue came after the corn, histamines, and probably about two or three more "issues", lol. Keep reading!

Green12 Enthusiast

Thinking about Kassandra :wub: :wub:

AndreaB Contributor
I think they just do a leg block with a light sedation, but I can't imagine being awake for 90 minutes while they cut my bones, so I may ask for the "forget everything" drug. One of those things really messes me up though, but I think it might be worth it to not hear the sawing. :lol:

What about ear plugs? I did have something done on my toes a long time ago. I don't remember them sawing bones though. Mine was toenails that grew from the inside of my toe. Seems like that problem came back a little but it doesn't hurt nearly as much as it did.

I had an lightbulb moment at 2 am this morning. My body hates citric acid. Remember how i got sick from the spaghetti. Well yesterday i had some iced tea that has citric acid and i felt a little off but still able to clean and cook lol. Well then my stomach was cramping and my head hurt at midnight.

I only got to page 7 last night. The talk about corn is kinda boring lol. I need to get to the good stuff like metals and stuff lol

Isn't citric acid on the moldy side?

MSG isn't too far into the thread. I had run across that within the first 90 pages. That was stuff I had started commenting on.

dlp252 Apprentice

Ear plugs might work...I'll bring some, lol! They're soft foam, so shouldn't be objectionable to them.

Guest tamedandfoxed
Katy,

Dont give up...hang in there. You'll get this figured out.

Is the Dr. "guessing" about the infection?? Have you had any tests run??

I've had several labs... they run a culture and about a week later (4 times now) the culture grows this strepticochous bacteria.. the logical treatment being antibiotics. but antibiotics have done nothing but give me candida. so they put me on this other drug which is a really old anti-depressant that for some reason they've seen good results with..but the side effects have made me brain foggy, depressed and really anxious / easily agitated. i.e. NOT FUN and it hasn't helped anything...

i feel disengaged from everything..


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confused Community Regular
Ear plugs might work...I'll bring some, lol! They're soft foam, so shouldn't be objectionable to them.

What about an ipod or mp3 player or even an old celiac disease player with head phones.

paula

aprilh Apprentice

Paula,

Citric acid is now derived from fungus. That's probably why your body doesn't like it. It would feed any candida issues that you might have. That might be a good one to avoid. I think Moldlady talked about it back on the candida thread???

Kassandra,

OH NO! :( That's all you need!

Does anyone know if it was from Iron IV's or IV abx?

aprilh Apprentice

Lisa,

About Zeolite....I was all into trying it and then I started researching it and found all of these websites saying DON"T take liquid form?? Have you read any of that? Some websites were really adamant about it. Something about the liquid form not being known if the structure is still in tact as it is in a mineral (powdered) form.

I guess I need to do some more reading. I know there are always somebody saying something bad about a natural product. I guess I just don't know enough about this stuff to judge either way.

It sounds like its working wonders for you - so maybe I'll just take a chance to try it!

April

confused Community Regular

April.

That all makes sense. I might have to dig up that old thread and see what it says. I have lived in denial about the candida isue long enough now lol.

The one thing i dont get is why can i drink beer that hs yeast and feel fine. But i cant have citric acid without feeling like death. I just dont understand lol.

Im guessing i better not even try cheese even with these enzymes. Im ao upset about this.

Whatever you find out about the zeolite please post here. Im thinking of trying it, but so afraid to try anything anymore.

paula

Rachel--24 Collaborator

I believe citric acid is from aspergillus specifically. Maybe you're sensitive to aspergillus??

Damn...I wish I could I could have a beer and feel fine!!

OK...I need supplement help!

I need calcium citrate....without any Vit. D added in. Just plain calcium....NO excipients and no other unnecessary junk. I just need calcium....is that too much to ask?? :rolleyes:

I cant find anything. :(

confused Community Regular
I believe citric acid is from aspergillus specifically. Maybe you're sensitive to aspergillus??

Damn...I wish I could I could have a beer and feel fine!!

OK...I need supplement help!

I need calcium citrate....without any Vit. D added in. Just plain calcium....NO excipients and no other unnecessary junk. I just need calcium....is that too much to ask?? :rolleyes:

I cant find anything. :(

I bet you hit the nail on the head with that assumption. That is one of the molds they found in the boiler room when i was so sick in the kitchen. I bet that is the mold that hates my body. Is there a test to test for that lol.

paula

AndreaB Contributor
I need calcium citrate....without any Vit. D added in. Just plain calcium....NO excipients and no other unnecessary junk. I just need calcium....is that too much to ask?? :rolleyes:

I cant find anything. :(

Yep, too much to ask. They like to put everything into everything. :angry: I had to get more supp's with the stearates. Can't be avoided and I need them for the amalgam removal for one.

mftnchn Explorer

Quick drive by, I'll write an email update later for my LLMD appointment.

Biggest change is that I have to go on the SCD diet. The tests show that I cannot handle disaccharides at all. My LLMD thinks this will make quite a bit of difference in how I feel.

Also he wants my 25 Vit D levels at 80, so I'm to take 10,000 a day and they'll do another blood draw in 2-3 weeks.

Sherry

confusedks Enthusiast

I'm back. Man that was rough! I started breaking out in hives and welts all over my body. Had horrible back and knee pain out of nowhere while infusing at the Dr's office, but I thought it was Lyme related so I didn't say anything.

I called the Dr, after I drove myself home, lol, and he said to take benadryl, lay down and call him back in 2 hours. Within 20 minutes I was having difficulty breathing. My face and eyes were swelling quickly. So we called the dr back and I was gasping for air as I was talking to him. He said to go right to the nearest ER.

We went, and they gave me all kinds of stuff to stop the reaction. Including steroids. :( But it was a life and death situation, so there wasn't much to say. They gave me oxygen and breathing treatments to open my lungs. Put all kinds of heart monitors on. Gave me pain meds.

They then decided because of the Lyme, etc. that since my body was so weak, I could continue reacting for a while, so they wanted to observe me overnight.

I'm still in a lot of pain. I talked to Dr H yesterday and he was concerned that they gave me steroids, but obviously there wasn't anything we could do about it. They infused Rocephin last night and that went fine.

It had to have been a reaction to the Iron IV, but it's strange because I've had 12 other Iron IV's and no reaction. So the problem is, now they don't want to give it to me again, but I'm still really iron deficient. My Hematologist said no more IV's, and he wants to follow up with me next week.

My concern is that I am so anemic, and I can't do iron IV's now. He said he might admit me back into the hospital to have another one, and have them observe me.

AndreaB Contributor

Kassandra,

Could it be the IV abx that threw things off with the iron IV.

That sounds like a scary ordeal, I'm glad you're ok.

jerseyangel Proficient

Kassandra,

I'm so sorry---that must have been very frightening for you. Take care, I'm sending good, positive thoughts and a hug your way :)

mftnchn Explorer

Kassandra, so good to hear from you, and ditto to Andrea's question.

Sherry

dlp252 Apprentice

Gosh Kassandra, that is absolutely FRIGHTENING!!!!

confusedks Enthusiast

There's no known interaction between the Iron and Rocephin. I will have to talk to the Hematologist on Tuesday and see what he wants to do.

It is possible to develop allergic reactions to anything and any given moment. People eat peanuts their whole life, then suddenly stop breathing one day....so it was definitely the iron. The thing that is so bizarre is that I had one on Monday and had NO problems at all! Then yesterday had a severe reaction. So who really knows? :P

jerseyangel Proficient
It is possible to develop allergic reactions to anything and any given moment.

Very true--allergies can appear at any time and can come and go throughout life.

So scary....

Green12 Enthusiast
I need calcium citrate....without any Vit. D added in. Just plain calcium....NO excipients and no other unnecessary junk. I just need calcium....is that too much to ask?? :rolleyes:

I cant find anything. :(

Did you look into Pure Encapsulations Rachel?

Biggest change is that I have to go on the SCD diet. The tests show that I cannot handle disaccharides at all. My LLMD thinks this will make quite a bit of difference in how I feel.

Oh wow Sherry, that's an interesting development. I hope the diet will make a difference for you.

I started breaking out in hives and welts all over my body. Had horrible back and knee pain out of nowhere while infusing at the Dr's office, but I thought it was Lyme related so I didn't say anything.

.My face and eyes were swelling quickly. So we called the dr back and I was gasping for air as I was talking to him. He said to go right to the nearest ER.

We went, and they gave me all kinds of stuff to stop the reaction. Including steroids.

They then decided because of the Lyme, etc. that since my body was so weak, I could continue reacting for a while, so they wanted to observe me overnight.

I'm still in a lot of pain. I talked to Dr H yesterday and he was concerned that they gave me steroids, but obviously there wasn't anything we could do about it. They infused Rocephin last night and that went fine.

My concern is that I am so anemic, and I can't do iron IV's now. He said he might admit me back into the hospital to have another one, and have them observe me.

Oh Kassandra, I'm so sorry you had to go through this, how very scary :(

That's the ER procedure for anaphylaxis, epi, antihistamines, and steroids, unfortunately :)

I'm keeping you in my thoughs, love and hugs to you.

Keep us posted as you are able.

tabasco32 Apprentice
I've known this girl for awhile and no WAY could she eat pizza before! In fact she couldnt even TOUCH pizza before...and actually I'm not even sure if she could LOOK at pizza without getting sick (or without totally ruining the pizza :P ).

Now she's putting up a picture of a whole pizza that she made....she's TOUCHING it and its not turning to WAX!! :o This is REALLY BIG news!!! :D

AND....she's eating leftovers!! :blink:

I'm not really touching it. Look closely at my HANDS!!! :lol:

tabasco32 Apprentice
Lisa,

About Zeolite....I was all into trying it and then I started researching it and found all of these websites saying DON"T take liquid form?? Have you read any of that? Some websites were really adamant about it. Something about the liquid form not being known if the structure is still in tact as it is in a mineral (powdered) form.

I guess I need to do some more reading. I know there are always somebody saying something bad about a natural product. I guess I just don't know enough about this stuff to judge either way.

It sounds like its working wonders for you - so maybe I'll just take a chance to try it!

April

If that were the case I would be getting sicker and not better. Zeolites cannot harm you in anyway. They are not absorbed by the body and something not absords is not being utilized. They clean the body out. Cleaning the cages of the zeolite does not change the structure.

I don't even know if this Dr. which I heard about before is even a certified biochemist like Rik Dietch. Rik is a very, very intellegent guy. I have asked him many questions with incredible answers.

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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